Love and Laughter in the Time of Chemotherapy Read online

  He sits down, rests one hand on my knee, over the blanket that is no longer warm, and says quietly and evenly, “Your blood test results show you have leukemia.”

  My first thought is “No, they don’t.”

  Because this is not how the “you-have-cancer” script goes. Surely he knows that. He is a doctor, for heaven’s sake. He is supposed to say, “There might be something that needs to be checked out. It’s probably nothing, but we need more tests to be sure.” He would then book a series of tests for me. Then weeks would go by and eventually I would be diagnosed. I even voice part of that script by asking, “Don’t you need to do more tests to confirm?”

  “No,” he says, without hesitating.

  “It’s definite, the blasts are everywhere. You need to be admitted tonight.” He also says, “You’re going to be okay. In two years, you’ll look back on this as just something that happened.”

  He means it as reassuring, but the words explode in my ears. I skip right over his “You’re going to be okay” because I cannot even register the possibility of being anything other than okay. What I register are the words “two years.” Two. Years. I cannot fathom being sick for that long. It is incomprehensible. I barely even get colds. I take on average two or three sick days a year. I’ve never smoked a cigarette in my life, much less tried any illegal drugs. I don’t drink alcohol. I love to swim, canoe, hike. I can’t have cancer. I can’t be sick for two years.

  Homer calls Simon. Simon calls our neighbors first, Marta and Pierre, to stay with Jack and Anna, and then he calls my parents. Soon everyone is at the hospital with me. There is nowhere private to talk. I have been moved to the hallway at this point, waiting for a bed in the cancer ward to become available. My mother tears off bits of a slice of cheese pizza she managed to get from somewhere and feeds it to me while we meet with the hematologist who will be in charge of my treatment.

  He tells me that I have acute myeloid leukemia, which will kill me if left untreated. The treatment will be one round of induction chemotherapy in hospital and then two rounds of consolidation chemo as an outpatient. The first round will take one week to administer, but I will have to remain in hospital for three more weeks to recover from it. The next two rounds will similarly take a week each, with three weeks to recover each time, but I can do those treatments from home. I will then need three months to recover from the treatment as a whole. I will be back at work in six months, November 1, 2014. The hallway is so brightly lit and noisy with passing people you would never know this conversation is happening after midnight. And even though it is so late, Homer remains there in the passageway with us.

  Homer and I have known each other since grade 7, and we started dating in grade 11, when he was fifteen and I was sixteen (he had skipped a grade). He has always had a special place in my heart as the first boy I ever loved. We were top students, luckily in a school where that did not make you a social outcast. At a grade 12 year-end assembly, where joke awards were passed out, the band teacher and strings teacher, whom everyone suspected were having an affair, got the Couple That Plays Together Stays Together Award, while we got the Wholesome Couple of the Year Award (a loaf of whole wheat bread).

  Homer was addicted to the TV show M*A*S*H and his ambition was to be an army surgeon like Hawkeye Pierce. He became exactly that, ultimately joining the Canadian Armed Forces to pay his way through medical school and then enduring several tours of duty operating on injured soldiers in Kandahar, Afghanistan. I wanted to be a writer and it took me a lot longer, but I guess I ended up being that as well. Our relationship ended when we graduated from high school and went on to different universities, but our friendship never did. It was my idea for him to intersperse his essay for his medical school application with lines from the John Donne poem that begins “No man is an island.” I thought the ending so perfectly described what I always thought of as his unselfish (but which I dismissed in other lesser people as self-aggrandizing) desire to be a doctor: “And therefore, never send to know for whom the bell tolls; It tolls for thee.” I believed in literature the way he believed in science.

  We had both come to Canada as very young children—he from Taiwan, I from India—with parents who did not end up working in jobs commensurate with their abilities. I always felt bad about my parents’ thwarted ambitions—the biochemistry lab my mother should have been running, the metallurgical engineering my father should have been studying. Homer, though, was not given to pity, not for himself, and not for others. When asked to do something around the house, he would mock his father, “You have a PhD, you open the jar.”

  Our parents believed in education above all else. When I was in my early twenties I had all four wisdom teeth removed one morning and fainted that evening at the dinner table. I groggily regained consciousness to find a firefighter in full gear looming over me asking me questions I could hear, but did not have the breath to answer.

  “Does she speak English?” he asked my mother, who had been hovering worriedly nearby in our cramped kitchen.

  She drew herself up, completely offended. “She went to Stanford,” my mother informed him, which to an Indian parent is a more pertinent piece of information for a medic than a blood type. If there had been room, I’m sure she would have insisted that fact be engraved, along with my grade point average, on the MedicAlert bracelet I now wear.

  All through my childhood my mother foisted upon me biographies of famous people: Thomas Edison, Marie Curie, Charles Dickens, hoping to inspire me, I guess. But all I gleaned from them was the suspicion that I could not be destined for greatness because I had never suffered, never worked in a blacking warehouse at the age of eleven, pasting labels on bottles like Dickens had. I would tell my mother accusingly that I would never be famous and it was all her fault because my childhood was too happy.

  For Homer and me, a fun afternoon in high school meant taking a long walk from our suburban subdivisions all the way to Rosedale, where Toronto’s old money lives, and picking out the mansion that would one day be ours. I would peruse catalogs of foster children to sponsor (just pennies a day!) from those international aid organizations, thinking we could start there, and then when we grew up, move on to adopting actual children plucked from the streets of China and India. We were going to save lives, literally and figuratively, with our scalpels and our pens and our sheer belief in ourselves and each other. We were going to rule the world and save it at the same time. So really it is not bizarrely coincidental at all, but rather poetically just, that when the bell tolled, I did not have to send to know anything, Homer was there to tell me.

  Chapter Three

  A person’s response to hearing they have a life-threatening illness is apparently similar to their response to the death of a loved one—namely, grief. There are either five or seven stages of grief, depending on your Google searches. The typical five are denial, anger, bargaining, depression, and acceptance. If you go for seven, the experts throw in shock and guilt, in no particular order. I don’t know how long each stage lasts—in one of my favorite Simpsons episodes, Homer Simpson goes through all of them in 10 seconds—but I know I am in denial for a very long time.

  I start with the firm belief that being confined to hospital for a month is something I can make the best of by making it as pleasant as possible for myself. Instead of learning more about my diagnosis or getting second opinions about treatment options, the first thing I want is for Simon to set up a visiting schedule for me.

  “What kind of time slots do you want?” he asks.

  I propose every half hour, starting at 9 a.m. and ending at 8 p.m., with an hour off for lunch and an hour off for dinner.

  “Don’t you want time to rest?”

  “Oh no,” I say airily. “But I think you should limit it to two people per half hour, I don’t want more than that.” I feel I am showing a lot of restraint.

  My first full day in hospital I have eleven visitors, not coun
ting Simon and my mother. It was a good thing Simon had brought in two folding chairs from home (the hospital supplied only one bedside armchair). People bring me chocolate and fruit and flowers, and even my next month’s book club selection conveniently downloaded onto an iPod.

  Homer, who looks in on me often, disapproves of my having anyone other than family visit, because of the infection risk. “But my doctor said it was good to have visitors!” I tell him. “He said studies show people who have visitors do better than people who don’t.”

  He presses his lips together. “Are they randomized studies?” he demands. “Did they take a million patients and then randomly assign visitors to some and no visitors to others?

  “Of course not,” he goes on, answering his own question. “No one could ethically do a study like that. So you can’t say visitors help, and we do know they can spread infection.”

  I see my doctor soon afterwards, but I don’t get a chance to ask him again about my number of visitors. He is there to soberly explain what he has discovered about my particular genetic mutation. Of course it is during dinner (one of the few hospital dinners I can actually tolerate), cheese ravioli with tomato sauce that gradually grows cold and congeals as I struggle to follow his explanation, more concerned about my dinner than my DNA.

  He explains that my cancer cells are caused specifically by pieces of chromosome 4 peeling off and exchanging places with chromosome 11, and chromosome 7 exchanging places with chromosome 10. That’s causing the mutations (also called “blasts”), which are the leukemia cells, and it’s associated with a more difficult to treat leukemia. I picture a kind of morbid square dance where partners peel off and join other partners they’re not supposed to join, while the fiddler, my body’s immune system, looks the other way and fiddles on obliviously. My doctor says they don’t know why cells start doing this, they have yet to link it to any known cause. It does not appear to be environmental or genetic. It’s referred to as “idiopathic,” I guess because that sounds better than shrugging your shoulders and saying “Search me.”

  It is possible, and indeed quite probable, that the above paragraph is a wildly inaccurate summary of what my doctor told me that evening. He is a brilliant and highly respected hematologist (he went to Harvard, according to my mother, who looked up his credentials). But what I’m doing is what I will continue to do throughout these pages: I’m relaying what I heard, and even though it is based on notes I jotted down in my journal at the time, it still may be very different from what was said. My scientific background ends with grade 12 chemistry; and while I did google stages of grief, and while I would later google Dante’s circles of hell (expecting to find one of them is a cancer ward), I never once googled leukemia, or cancer, or treatments for same.

  My only question at the time, which I don’t voice, is why tell me things I cannot control? Is knowledge power or is ignorance bliss? I seriously toy with putting in a request to be told nothing, on the grounds that it will only upset me, even though that goes against everything we hold sacred in this information age. Isn’t it better, I fret, to be happily ignorant and eat my dinner in peace? Wouldn’t that be better for my health than to have my stomach clench with worry and fear and leave my ravioli uneaten? I never do make that request, but I ignore the “what,” the hard facts, even as my friend Kate is searching the Internet night and day, basically going to medical school on my behalf. Instead, I spend my time on the “why,” trying to relate to my cancer cells on a personal level, trying to understand what makes them tick.

  I would add an eighth stage to the stages of grief: betrayal. All this time, I had thought of my mind and body as being on the same team. And now I feel like my body wants to kill me, and I feel betrayed. I try asking Homer why my cells are doing this.

  “Don’t they realize that if I die, they die too? Aren’t they motivated by self-interest to survive at least? What’s the point of killing their host? They need me. Don’t we have bacteria that live in us all the time? Why can’t cancer cells do that? Isn’t it in their best interests to keep me alive? Don’t they want to live?”

  “You know, they don’t actually have emotions,” Homer answers, patiently explaining, without a hint of derision in his voice (which is pretty impressive, considering the nonsense I’m spouting) that there is no point inquiring too closely into what motivates a chromosome.

  I find that hard to believe because I ascribe emotions to everything. I know, for instance, that my house loves me, that my small leather knapsack is loyal, and that my computer thinks I’m an idiot. Even the hair on my head I consider as having aspirations that are separate and apart from my own. Some of my hair manages to survive the first round of chemo, and I admire its tenacity. Way to go, I think. Way to cling to life even in the face of such an assault.

  I thought I would lose all my hair immediately because that’s the classic image I have of a cancer patient, completely bald. But it actually takes a long time because I have a lot of hair. Every day I rake through it with my fingers and come away with clumps and clumps.

  “Do you want a bag to keep it in? As a memento?” asks one of the nurses sentimentally when she spies an entire nest of it on my bed.

  “Ick, no” is my unsentimental and revolted response.

  When I tell Simon about it, he says he’s been meaning to ask me if I would like him to shave his head in solidarity. I look at him in disbelief and blurt, “Are you insane?” before belatedly adding, “But that’s nice of you, to offer, I mean…uh, thanks.”

  A few months before, at a party, I had run into a lawyer I know who had been battling cancer herself. When I exclaimed about how good she looked, she instantly whipped out her cellphone to show me photos of when she was completely bald. Meanwhile, since my hair really started to go, I haven’t looked at myself in the mirror without my cap on. I have no idea what my head looks like right now, much less have photographic evidence of it. It was a friend who sent me the cap, a beautiful coral pink, streaked with silver, that ties on easily with a bow to one side. (Think cancer patient meets 1920s flapper.)

  My first hospital roommate is going through the same hair loss at the same time as I am. It turns out she and her husband own the Halloween supply store that Simon and I take Jack and Anna to every year to buy accessories for their costumes.

  “She said she’s planning to use Halloween wigs from their store,” I tell him.

  “Which ones?” he asks with interest. And we run through the ones we remember: sexy nurse, vampire vixen, bride of Frankenstein.

  Jack and Anna are unperturbed by my baldness.

  “Terry Fox’s hair came back in curly!” Anna informs me cheerfully during one visit. “It used to be straight before.”

  “Cool,” I say, “I always used to wish I had curly hair.” Neither of us mentions that Terry Fox did not make it.

  I had started chemo on May 1, three days after my admission to the cancer ward, but the first few days didn’t seem terrible at all. I’m not nauseous; I’m not especially tired; I can chat with friends who visit. I bask in compliments about how brave I am. I nobly announce that really, I’ve had it so good until now that even if I were the one responsible for handing out cancer (and I can picture that as an actual job, albeit not a very popular one) I’d be, if not the first, definitely one of the first people I’d give it to. Like it’s my turn for a tragedy. Like it’s only fair.

  “This isn’t so bad!” I tell Homer proudly, when he drops by midway through the chemo. But he doesn’t echo my enthusiasm. “You’re in a marathon,” he warns me. “You’re not even a quarter way through yet.” I pout, annoyed with him for raining on my parade, for stopping me from using denial as a shortcut to bravery. But he is right. The chemo hits me toward the end of the seven-day course, because it’s the cumulative effect of the drugs that knocks you out, not the daily infusions.

  Chemo works by killing rapidly dividing cells, which include, of course,
the cancer cells that are the target of the drug, but also all other rapidly dividing cells—your infection-fighting T-cells, which are found in your blood and in a particular bend of your bowel (which is why you become prone to digestive problems such as diarrhea and worse), your hair cells, which is why you lose your hair, and even your taste buds, which is why you lose your appetite.

  Once the effects of the chemo hit me, I suddenly do not want visitors and we abruptly suspend my crazy visiting schedule. But even though I cancel visits from friends, there is still an endless stream of official people who come to call when you’re in the hospital: student volunteers who offer to help you do simple movement exercises; older volunteers with carts of magazines and books; nursing managers who want to know if you’re satisfied with the nursing services you’re receiving; and nutritionists who push samples of high-protein powders on you to up your calorie count and leave charts where you are to tick off your food preferences in great detail, right down to the number of packets of sugar you want with your tea.

  Also, I agree whenever I’m asked to participate in a research project, and that means giving extra vials of blood, and being interviewed almost daily about responses to blood transfusions. I’m in the control group that did not get the irradiated blood, though I don’t think I was supposed to know that.

  I reach my limit, though, with the minister who keeps dropping by (while there may be no atheists in the trenches, there still are atheists in the cancer wards), because he always comes accompanied by two women whose job descriptions I forget. While it might be possible for someone who is despairing to reach out and bare their soul to a single kindly person, religious or not, I can’t believe that anyone would feel comfortable baring their soul to a bureaucratic committee of three. It’s a pointless exercise, and I put in a request for them not to visit, which they eventually respect.